Family history of cancer

Researchers in the US investigated the importance for doctors of obtaining knowledge of a family's cancer history to assess risks and initiate appropriate early interventions, that is screening recommendations, etc.

Transcript

Norman Swan: While the way we live and work and the environment in which we exist make a huge difference to our health and wellbeing we're also defined by the genes given to us by our family. The illnesses that brothers, sisters, parents and even uncles and aunts have may tell us a lot about what you and I can expect around the corner and perhaps allow us to take avoiding action like extra screening or lifestyle changes.

The thing is though that often we're not asked about our family history or if we are it's when we're younger. Dr Dianne Finkelstein is principal investigator of the US Cancer Genetics Network; she's also Professor of Biostatistics at Harvard Medical School.

She and her colleagues have been following a large number of people every year for 10 years or so looking for the influence of family history on their risk of cancer. They're asking the question: does our family history change as the years go by, because if it does, it has enormous implications for many of us. Now you'd think that your genes are pretty much fixed so why should your family history of, say cancer, change with time?

Dianne Finkelstein: That's a good question. If one at the age of 30 first goes to their family physician and has a check-up they may have very few family members who have cancer at that point. On the other hand if you look at that same person say 20 or 30 years later, now they are themselves getting up in age and their siblings have gotten older and their parents have gotten much older and could have gotten cancer themselves, and their aunts and uncles and they may have children as well who were at risk. So the number of individuals in their family who have cancers of various types could have changed pretty significantly over that 20 years of time and because the screening guidelines are dependent on your family history all of that could change. For example the screening guidelines for a colonoscopy the minute that you report to your physician that you have for example a sibling, a brother who got colon cancer at 38 or two relatives who have had colon cancer, your uncle and your father on the same branch of the tree, all of a sudden it all changes and they would want to do a colonoscopy on you at a much earlier age. And some of the genes actually can make people have cancer at an older age but just with a much higher risk. In fact when you start to see the same kind of cancer on one side of the family it begins to make you worry that your own risk could be higher.

Norman Swan: So what did you find?

Dianne Finkelstein: Family history does seem to change substantially enough between the ages of 30 and 50 that it's important to be reporting this to your physician so that you get the proper screening.

Norman Swan: To what extent did the story change?

Dianne Finkelstein: For colorectal cancer age 30 only 2% were in what we considered to be a high enough risk group that they would have been indicated to have a screening exam done at an earlier age than for the normal population. But by the age of 50 this had jumped to 7% of the people who were considered to be a high risk. So that's an increase of 5% and that number may sound small but you're talking about millions of people.

Norman Swan: And what about breast cancer?

Dianne Finkelstein: We found a similar effect with breast cancer that at age 30 only 7% of our population have an indication of higher risk but by the age of 50 this had increased to 11% of the population. So again there was an increment of about 4% difference, that 4% of the women had now moved into a high risk category by the age of 50 who hadn't been in that category at age 30. So if a physician had taken their family history when they first came at the age of 30 and then not asked any questions after that they would perhaps have screened the individual insufficiently for what their family history would indicate.

Norman Swan: And prostate cancer?

Dianne Finkelstein: For prostate cancer the results were a little less clear.

Norman Swan: Now in Australia the tumours you're talking about in particular colorectal cancer, breast cancer I mean by the time you got to 50 in Australia we don't do colonoscopy screening but we certainly do faecal occult blood testing and in breast cancer you're already in the mammographic screening campaign. What difference is it actually going to make to you if you're already being screened at the age of 50?

Dianne Finkelstein: This is based on what the American Cancer Society suggests. So for example for colorectal cancer, if one has a greater than equal to one first degree relative diagnosed before the age of 60 or greater than equal to two first degree relatives diagnosed at any age then they're considered as having a family history for colorectal cancer.

Norman Swan: And that would put you, at least in the Australian context, into the colonoscopy screening context.

Dianne Finkelstein: Right.

Norman Swan: And breast cancer?

Dianne Finkelstein: For breast cancer again the criteria for family history is having greater than equal to one first degree relative diagnosed before the age of 30 or greater than equal to one first degree relative and greater than equal to one second degree relative diagnosed before the age of 60 or at least two first degree relative one diagnosed before 60 and one diagnosed before 70. Any of those three standards would put you in being considered as being of elevated risk. And in that case the difference would be not just the mammography but that you would have an annual magnetic resonance imaging or MRI in addition to the mammogram for women who were aged 35 to 60.

Norman Swan: Now what you don't know presumably from this is just taking the breast cancer genes like BRCA1 and BRCA2 where you know there's maybe a 30%, 40% or 50% chance, maybe even higher, of developing breast cancer during your life. Presuming you don't know your lifetime chances of breast cancer when you score more highly at the age of 50 than you did at the age of 30?

Dianne Finkelstein: That's true. The pieces to this puzzle that aren't complete at this point are we don't know what would be the optimal screening frequency, we don't know...

Norman Swan: Or if you're a woman and you say you're now in a high family history risk category do you go off and have a bilateral mastectomy as you might well do with BRCA1 and you might even think about your ovaries too?

Dianne Finkelstein: I don't think the lifetime risk is at this point viewed to be high enough to do any kind of surgical prophylactic care.

Norman Swan: There's significant cost attached to this if you're going to double the number of people having magnetic resonance imaging scans for example of the breast every year. You've got to really want to know that you're going to be picking up tumours that matter and given that maybe about 30% of the tumours you find already on breast cancer screening are not going to do anything. How confident are you that you're actually going to find tumours at a rate that is worth the financial investment?

Dianne Finkelstein: Well that's outside the realm of this paper. The whole issue of what is the most appropriate screening and the cost versus benefit of each screening modality is really a separate issue. The primary point we're trying to make is that there is a very strong indication that family history is important for your medical care and for indicating what your risk is of getting various cancers such as breast and colorectal and that therefore it's important for both the physician and the patient to be aware that this information must be given to the physician so that the proper screening can be done. And it's really a message both to the physicians and to the patients - to the physicians that they should be collecting this information from patients often enough that they'll get accurate information and act on it appropriately. And also to the patients and there's really a couple of messages to patients - one is make sure you report this to your physician but also even more important than that it's crucial that you know about the cancer that occurs in your family. It's important for you to find out whenever someone in your family is diagnosed with cancer as precisely as you can, the location of the cancer, the stage it was at and the age of the individual. And that could mean to any relative, you may have an aunt or an uncle or grandparent and it's important that that information be communicated within families because it could impact everyone's health.

The other point that I wanted to make by the way, when you find out about a relative's cancer a lot of times people think that the cancer was in the site that killed the person, that was there just before they died, so they'll say oh my mother died of brain cancer and oftentimes that is not the primary site.

Norman Swan: It has spread to the brain?

Dianne Finkelstein: It's important to find out where the primary site was, so it could be that someone had lung cancer that eventually metastasised to the brain and they died with the malignancy in their brain, but the primary cancer was in their lung and that's an important piece of information for you.

Norman Swan: That was Dianne Finkelstein who's Principal Investigator of the US Cancer Genetics Network and Professor of Biostatistics at Harvard Medical School in Boston.

References:

Ziogas A et al. Clinically Relevant Changes in Family History of Cancer Over Time. JAMA July 13, 2011;306;2: 172-178

Louise S. Acheson Recording, Interpreting, and Updating the Family History of Cancer - Implications for Cancer Prevention. (Editorial) JAMA July 13/2011;306;2:208-210

Credits

Comments (7)

Jill :

29 Aug 2011 9:05:55am

Good Morning.

- How can we know our family history when doctors across all modalities have historically refused to provide medical reports etc. to patients. There is NO doubt doctors have preferred to keep patients at arms-length from any detail, and most certainly have resisted providing print-outs of medical reports.

- At 60 years I have had a long experience of trying to obtain medical records for myself and my Mother and Father. I am now given blood test results when I ask for them, and imaging reports are usually included in the films given to patients because doctors no longer want to store them .. that's how come patients receive those reports.

- GPs do not want to give patients ANY information unless pressed, and even then it is limited; no copies are given of reports from hospitals or specialists. This is apparently a privacy matter .. EVEN THOUGH THEY ARE ABOUT OURSELVES!

- I understand the information contained in some reports, for some patients may require more thoughtful interpretation or a rewrite of the important 'family health history' points to the patient but GPs say they don't have time for that.

- My elderly Mother's GP referred (in writing) to a GP who is working as an 'Acupuncturist'*. The GP wasn't interested enough in feedback from the Acupuncturist-GP to request a summary letter. I pressed the GP for this and eventually got it in August for January-February treatments. The GP thought it was very nice of this Acupuncturist-GP to provide the summary, and told me GPs are not structured and funded to write treatment summaries for the GP who referred them! This so-called Acupuncturist who is running his business on the coat-tails of being a GP uses laser ONLY. He caused significant burn rashes on my Mother and said nothing about it in his summary letter so the GP didn't know anything about it. GPs say they are interested in the well-being of patients but usually just go through the actions.

* This Acupuncturist is not an acupuncturists bum; he is a charlatan. He used no proper diagnostic methods and definitely did not treat on an wholistic level. He gives REAL Acupuncture a bad name and his secrecy and witholding important information from the GP does nothing to assist the understanding of the usefulness of these modalities.

- ALL HEALTH PROFESSIONALS including all Allied and Complementary services should have to report-back to the GP whether the GP has referred the patient or not. But AT LEAST!, GP-to-GP should be informing one another.

- The health system is very poor. There is so much banging-on about health costs and yet GPs, the AMA and others (including the pharmaceutical companies) vigorously work against it .. and it's working! much to their delight and their full pockets.

There is no doubt many complementary treatments, especially if started early, can intercept some serious illness.

Jill ... continuing :

29 Aug 2011 10:53:00am

THIS IS A CONTINUATION ..

Before continuing, please note:

I presume I ran out of space within the maximum 3,000 characters or 500 words in the 'Have Your Say' field. It would be helpful to have a counter so contributors could streamline their Comments to fit the space. I have no idea how 3,000 characters or 500 words looks. A counter would have prevented me from having to revisit this topic.

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The continuation ..

- In short, between GPs' personal inclinations and willingness to provide an overview; a GP's power of resistance, using all sorts of evasive techniques; and privacy laws, patients will not be able to gather useful family histories. We should all be given reports, results and summaries as a matter of course.

- I have gathered what I can on my Mother who is alive and my Father who died. In one of the two health summary documents I obtained on my Father I noticed a connection to my recently diagnosed CLL (Chronic Lymphatic Leukemia). Would that have helped me if I had known about it earlier?

Records need to be available in a timely manner so action and any testing can begin earlier.

- Perhaps everyone should all be given folders as a 'starter-pack' from the first childhood medical visits and tests .. something to get patients started on a life-time of record keeping. Finding a digital way of recording test results and treatment outcomes for individuals to this information may need to be provided digitally (for some) via passwords on a majorly-secure Federal Health Department intranet. No doubt there is a chasm of privacy laws to get in the way ..

- By the way, Complementary health services, many of which include qualifications that are government and industry accredited, WANT to be registered and held accountable. There is also usually atory 'Continuing Professional Development and Education'.

- In the current health structure GPs would need to do the referring to Complementary services and THEY DO NOT WANT TO KNOW ABOUT HAVING TO LEARN NEW INFORMATION, further than their acknowledged already big load. If proper and FULL health treatment options were used along with standard approaches, where all treatments no matter what modality, had a responsibility to report-back to the GP or somebody relevant, THEN we would have worthwhile health histories to pass-on to our families (.. as well we would have a community of people who are alot healthier because more information is known).

- Also, an improvement in health standards would happen by bringing back regular referrals and use of COMPOUND CHEMISTS! .. who should then also report-back their concoctions to the GP or other.

- WHEN ARE THE PEOPLE IN-CHARGE OF HEALTH GOING TO REALISE the pharmaceutical company successful-push of ONE-SIZE-FITS-ALL does not suit everyone. Proper and thorough individual patient assessments and treatmen

Jill :

29 Aug 2011 1:34:42pm

THIS IS A FURTHER CONTINUATION due to not knowing what space I have available ..

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The last continuation ...

- WHEN ARE THE PEOPLE IN-CHARGE OF HEALTH GOING TO REALISE the pharmaceutical company successful-push of ONE-SIZE-FITS-ALL does not suit everyone. Proper and thorough individual patient assessments and treatment plans** are just not offered. If they were then there would be a huge number of people who won't end-up in hospital or in early care.** GPs don't seem to have treatment plans, and I know through experience once a health records gets too long, they don't bother looking back, "Too much there" I was told. Don't they have Summary sections?..

- How are we to help our families understand or provide them with useful information if patient health is not properly documented in the first place.

Ellena Biggs :

30 Aug 2011 1:35:25pm

I am an adoptee and my birth mother died last year. I did not know she had bowel cancer and I only found out due to the fact that the Coroner conducted an examination into her cause of death. My mother was extremely secretive about her health and sadly had no sense of a medical responsibility towards me even though we had been reunited since 1985!! I'm lucky that a lady at my mother's funeral told me the Coroner was involved in my mother's death or Iwould not have known of this cancer. Now of course I've just had my colonoscopy. Thank you for an informative program. There must be many adoptees who will never know thier medical history.

meg fletcher :

30 Aug 2011 6:59:40pm

Dear Ellena,We as adoptees will always struggle with the painfull consequences of our situation in life. I too have recently been diagnosed with an hereditory cancer. It wasnt until my 50th year that I sought a medical history without succsess. Take heart in knowing that you may be only one person in the world but I am sure to someone you are the world.

Noel Wauchope :

02 Sep 2011 5:59:35pm

I confess I did not hear the entire broadcast - but most of it.It just seems to me that all this cancer cause research is geared to finding a biological, genetic, or pharmacological "fix".I knew a rural family where several members developed ling cancer.Their house had poorly ventilated open fire, with poorly functioning chimney.I suppose that their lung cancers were genetic?Dowes anyone look into the environmental or behavioural factors that influence families' health?

Ric :

08 Sep 2011 4:24:39pm

Hi, noel, certainly these other factors you speak of are important, and in some instances bleatingly obvious, but examining a person's family history of something like Bowel Cancer is about more than just genetics, inheritability itself is complex and there are a range of other factors outside of classical genetics such epigenetic changes that may be passed on and interact with environmental exposures. Bowel cancer may run in family’s because they may “share “lifestyle factors that may increase their risk of developing the condition, in addition to some other vulnerabilities that they may have inherited, which interact to increase their risk. Family history is valuable because it can be a good starting point for further examination in some cases.